Living with epilepsy - Introduce yourself & meet others

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@jenkie

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

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Hi @jenkie, fellow member @shanef86 wrote about taking CBD oil for seizures, saying they didn't help his seizures directly but helped with the feeling of anxiety. You may also wish to read @kneubauer1's posts where she describes how CBD oil helped her 10 year old son. I'm also bring @carnation into this discussion.

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@joedavid

Hello,I had a grand mall seizure in 2014 and i believe it was caused by mercury poisoning from my fillings.Has anyone else think they have any neurological issues from amalgam mercury fillings in their teeth.All the research i have done makes me believe that is my issue.i have found people on line that were told they had ms and found out the mercury caused the issue.For some reason every doctor i have been to will not admit mercury is a neurotoxin.would really like to hear from anyone that has any info on the mercury and what to do to get it out of your brain.

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Hi @joedavid, have you considered have the fillings replaced?

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@jenkie

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

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Jenkie, you may also be interested in this discussion

– Medical Cannabis as a treatment for Seizures https://connect.mayoclinic.org/discussion/medical-cannabis-as-a-treatment-for-seizures/

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@jenkie

My daughter is 17 y/o and has had seizures for 7 1/2 years due to the Bartonella Virus (cat scratch fever). She is currently on 3 meds keppra, Banzel and Onfi for seizures and had a VNS implanted in 2016. She still has seizures daily.
We have tried multiple meds and they have failed to stop the seizures.
Our doctor advised us surgery was not an option due to where the scar tissue was located (occipital lobe).
Has anyone tried the CBD Oil? Does anyone know the best place to get pure CBD Oil at a good price?

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CW Hemp, good quality CBD oil extract, a little slow on delivery, order the Bonus pack, 5 bottles for the price of 4.

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Why Would adult be diagnosed with Lexical Gustatory Syndrome? When originally diagnosed with epilepsy?

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Hi, @briandungan – I've moved your post asking about why one might be diagnosed with lexical-gustatory synesthesia when originally diagnosed with epilepsy here to this discussion, as some of the members here like @brailoo1217 @robertjr @12271997 @jktaheri @tracy612 @jktaheri may have some thoughts for you on this question.

Is lexical-gustatory synesthesia a new diagnosis for you?

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@lisalucier

Hi, @briandungan – I've moved your post asking about why one might be diagnosed with lexical-gustatory synesthesia when originally diagnosed with epilepsy here to this discussion, as some of the members here like @brailoo1217 @robertjr @12271997 @jktaheri @tracy612 @jktaheri may have some thoughts for you on this question.

Is lexical-gustatory synesthesia a new diagnosis for you?

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It's Lennox-Gastautsyndrome

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@lisalucier

Hi, @briandungan – I've moved your post asking about why one might be diagnosed with lexical-gustatory synesthesia when originally diagnosed with epilepsy here to this discussion, as some of the members here like @brailoo1217 @robertjr @12271997 @jktaheri @tracy612 @jktaheri may have some thoughts for you on this question.

Is lexical-gustatory synesthesia a new diagnosis for you?

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It's 12271997 I don't have that condition

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My son aged 25 is having seizures. His birth was difficult and there was a lump in his head. Once it was crashed then started the problem. Seizure, i.e. tongue biting and hands & leg stripness occured. No other type of seizure. That too only during nights. 2 or 3 episodes only. He is under medication for a long time and doctors have itold that if seizues does not occur within 4 -5 years then it won't occur. Is is true. But he is continuing treatement. Divuna-ER, Dicorate 500 he is taking.

Liked by Leonard

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It's12271997 It's not my birthday. I'm not having anyone respond to agraghia/ anomia conversation. Can you help me?

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I have had Epilepsy for 51 years. I’ve mainly suffered Tonic Clonic and Convulsive Status Epilepticus which ended me up in the hospital in induced coma’s for various periods of time and more often than I care to remember, even if I could. My first episode cost me all my memory from age 15 back. None has ever returned. I also had focal and absence seizures but not as many. I’ve had over 13,000 seizures in 46 years. I was a frequent user on various Epilepsy forum sites. I also raised money for Epilepsy research. I have ended up falling down staircases, falling off my bicycle between parked cars, in the gutter on peoples lawns and almost anywhere else one can imagine.
I really enjoy trying to help others new to this most distressing condition and the stigma that goes along with it.

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@venki

My son aged 25 is having seizures. His birth was difficult and there was a lump in his head. Once it was crashed then started the problem. Seizure, i.e. tongue biting and hands & leg stripness occured. No other type of seizure. That too only during nights. 2 or 3 episodes only. He is under medication for a long time and doctors have itold that if seizues does not occur within 4 -5 years then it won't occur. Is is true. But he is continuing treatement. Divuna-ER, Dicorate 500 he is taking.

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Venki, The stupidity of some doctors is ridiculous and never ceases to amaze me. ABSOLUTELY NO ONE can predict if or when a seizure will occur. I suppose the possibility of not having seizures as time passes may increase the probability of them not returning however if medication is controlling the seizures over that period of time then all bets are off. There is never any guarantee. If your son had a normal Neurological exam, normal EEG, and MRI and is not on any anti-seizure medications during those 4-5 years perhaps his chances are higher he may not have more seizures. Never assume they are gone forever. I’ve seen seizures return after 25-45 years later. Another thing to remember is once you stop medication the possibility does exist seizures can return more severe and frequent.

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@jakedduck1

I have had Epilepsy for 51 years. I’ve mainly suffered Tonic Clonic and Convulsive Status Epilepticus which ended me up in the hospital in induced coma’s for various periods of time and more often than I care to remember, even if I could. My first episode cost me all my memory from age 15 back. None has ever returned. I also had focal and absence seizures but not as many. I’ve had over 13,000 seizures in 46 years. I was a frequent user on various Epilepsy forum sites. I also raised money for Epilepsy research. I have ended up falling down staircases, falling off my bicycle between parked cars, in the gutter on peoples lawns and almost anywhere else one can imagine.
I really enjoy trying to help others new to this most distressing condition and the stigma that goes along with it.

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hi jakedduck1,ive had grand mals since i was 5 ,now 64,losta lot of memory through the years,most of my schoolyears forgtten.might be for the best,didnt really have much enoyment as a kid,always worried about aseizure in front of everyone.Never kept track ofseizuresdidnt want too.memory of seizures seemto fade away..To me im 64 and still around,alot bad situations but still in one piece.Just wish i hadnt let my problem kept me in the background during my school years,few friends,no sports,nogirl friends,no prom.kindabothers me now

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Hi Robert,
E for 59 years, long time huh. I’m 65 and had E for 51 yrs and have had some of the same problems so I can relate to how you feel. I sometimes feel like you about the childhood memories. However when looking through our old pictures I really miss the memories that go with them, especially those of my parents. I didn’t even know my parents when they picked me up to take me home from the hospital after being in an induced coma for a month. It was so frightening to go with basically strangers to who knew where. But it all turned out well. My parents sat with me one on each side with pictures and explaining where, when and all the details. We sat for hours they answered all my questions. The nurse had called my parents and told them how scared I was to see them. When they did the Mental Status Test I was Oriented X1 which means you only know who you are. I’m not sure I knew that much.
I was recently thinking about the prom too. No girlfriend here either. It’s painful to know all the things we missed during our younger years (assuming you missed the same things too.) I do wish I remembered something about my best friend though. I see him occasionally and it’s somewhat awkward. Even now I don’t remember trips. I went to Yosemite with a couple friends and don’t remember the trip at all. Don’t remember anything about the Worlds Fair in New Orleans except the horrible humidity. It’s like that about everything I do. To this day my brother can name virtually every city we went through and what the wether was like in those cities. My brother when talking about our childhood with my mom he always says “Do you remember, no you don’t” and I don’t. It doesn’t bother me at all. I also had very few friends even now I have only about 3 friends (true friends.) Having seizures in front of people never bothered me since I was usually having one. I was asked to leave school in the 10th grade since the floor was my desk most of the time. If I wasn’t seizing I was post Ictal. I’ve had seizures everywhere, roof, tree, on bike, driving, stairs, middle of the street, swimming pool, space mountain at Disneyland you name it. I laid on the floor a lot while watching TV since I’d be there soon anyway. Are you still having any seizures Robert?

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Jeez, sorry about the book Robert. It helped to get some stuff off my chest. The worst thing is my lack of a sex life. The meds killed my libido. Have to give myself an injection in my penis for an erection. It’s hell to get old with Epilepsy.

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